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My Pandemic Baby Is Pulling Us Out of Our Cozy Cave. But How Will the World See a Disabled Mother Like Me?

12 minute read

I am a different person now than I was when this pandemic started. I don’t just mean that I’ve stopped wearing makeup and started wearing leggings as my work-and-play uniform, although, yes, that too. Everything feels different because I went into the pandemic with a cute baby bump and the habit of sleeping through the night, and somewhere in there and with very few witnesses, I transformed into an actual mom.

Nearly a year after my son was born, I still am somewhat shocked to hold this title. I am now and forever will be someone’s mom! It’s an adjustment that I’m sure feels massive for most parents, whether their babies were born during a pandemic or not, but for me, much of the surprise is a result of having very little experience seeing parents who look like me.

I am a disabled mom. More specifically, I am a mom with paralyzed legs who uses a wheelchair to get most places. Before I found out I was pregnant, the idea that I would be a parent felt as likely and terrifying as taking a trek to outer space in a homemade rocket. And it would seem I’m not the only one with this lack of imagination. I don’t think a doctor had a serious conversation with me about the option to have a baby until I was 33 years old. Before then, my questions were usually dismissed. “We won’t know until we know,” I heard again and again.

One of the great losses of having a baby during a pandemic was not getting to share him with the world. I took hundreds of pictures of him—on a lemon-print blanket, on his changing pad, on his dad’s chest—and texted them to everyone I knew, so eager for others to witness his rolls and wrinkles. But sheltering at home gave us something too. It provided privacy for me to figure out the mechanics of motherhood from my seated position. I was allowed to ease into the role without much scrutiny or unwelcome feedback. It took time and practice to figure out our rhythms; I learned to lift him from the floor to my lap, in and out of his crib, up and over the baby gate—all without an audience.

The first time I took Otto to one of his doctor’s appointments by myself, when he was three weeks old, I was nervous. It was one of my first experiences occupying the role of mother in public. I pulled our car into the parking garage, lifted him out of his car seat and bundled him into his wrap. He curled into my belly. I pushed us toward the hospital, where a valet stood at her post by the front doors.

As soon as we exited the garage, I felt her eyes on me. I can’t know what she was ­thinking—maybe I reminded her of someone, or maybe she’d just remembered she’d forgotten to pick up milk at the store. Whatever the meaning behind her expression, it didn’t change the way her unrelenting gaze made me feel as we glided by her, as if she expected me to drop my baby onto the concrete at any moment. I willed myself to exude the confidence I’d started gathering at home. I knew what I was doing. He was safe with me.

She watched us every foot of our journey, craning her neck to monitor us until we disappeared inside. Our smooth entrance into the hospital didn’t seem to reassure her of my abilities; she glowered at us again as we returned to the garage after Otto’s checkup. In fact, her surveillance became the bookends to all of his appointments. Each time, I made it back to our car shaken.

Regardless of intent, every moment we spent in public sat atop a fraught history I couldn’t ignore.

Not every encounter with strangers felt sinister. Some were nice, like when people in elevators chuckled over Otto’s expressive eyebrows sitting beneath his bright red hat with a green stem shooting out the top, and we got to explain that it was his “Tom-Otto” hat knitted by one of my students. Some moments were puzzling, like the first time we took Otto to a park—my partner Micah pushing him in a stroller and I rolling ­beside—and a woman passing us looked at Otto and nodded toward me. “Does she ever give you a ride in that thing?” she asked. I paused, perplexed. Did she imagine me as the family dog, fulfilling the singular role of an animated plaything for my son? Some responses to us were kindly meant, like when the sanitary workers loading our garbage onto their truck saw me transfer Otto into the car and applauded as if I’d stuck the landing on a triple axel while holding him up by my pinky. By that point, the ritual had become an ordinary dance for us, albeit a tad elaborate. Were we really such a spectacle?

Regardless of intent, every moment we spent in public sat atop a fraught history I couldn’t ignore. Disabled people have faced barriers to adoption, lost custody, been coerced and forced into sterilization and been pressured to terminate pregnancies. This legacy of fighting to be seen as trustworthy and deserving parents curled around the edges of my every interaction. Who here doubted my ability to keep my son safe? Who was looking for signs of my neglect? Every moment with onlookers was a moment I had something to prove. Even imagining an afternoon at the park made my body tense.

All we needed, I tried to convince Otto, were the comforts of our cozy cave where we could tune out the spectators and pretend our bubble was the whole universe. As long as we had Dad, FaceTime, takeout and daily bubble baths, we were set. Why risk being misjudged when we could escape notice altogether?

Otto disagreed, vehemently, faster than I knew babies could have opinions. He developed a high-pitched screech like a teakettle announcing its boiling point that was quelled only by leaving the confines of our little house. For months, he clamored for the great wide world like an angsty Disney princess. The spark behind his morning eyes made me think he’d like to twirl under an open sky and sing with strangers at the market.

The first time he sat in a room with his cousin Sam—hardly more than a baby himself—Otto erupted in giggles we’d never heard from him. He tilted his head to the side and scooted right up to Sam, not more than a few inches from his face—“Are you real?” he seemed to ask. He’d cup his hand against Sam’s cheek, the joy hitting him in waves. Sam held very still, eyes wide, bewildered by the focused attention. The moment was sweet, but a pang of vulnerability rose in my chest. Instinctually, I thought, “Don’t love so hard! You might not be loved back!” Otto didn’t know to gauge Sam’s reaction. He didn’t realize Sam wasn’t reciprocating.

The author and her family have started a tradition of giving each other a flood of kisses on their way out the door
The author and her family have started a tradition of giving each other a flood of kisses on their way out the doorJess T. Dugan for TIME

My baby is pulling us out of our cocoon and willing us out into the world. Part of me wants him to lap it up—to feel the bustle of a crowd on the edge of a parade, to smell the mix of sunscreen and chlorine at the public pool, to hear a room fill with the sound of people singing. But Otto doesn’t understand that seeing the world means being seen back. He doesn’t know the feeling of being inspected, evaluated, misunderstood. He doesn’t know how awkward and uncomfortable it can feel to be humans together. He doesn’t know the worry of saying the wrong thing, wearing the wrong thing, being the wrong thing. How do I teach him to be brave? To hold on to himself when the opinions of others are loud and everywhere? To know what risks are worth taking? To protect himself? How can I teach him even one thing, if I haven’t figured it out for myself yet?

As my brain circles the risks and rewards of leaving the house, as I talk with my friends, as I read Twitter, I realize I am not the only one feeling trepidation about re-entering the arena. So many of us have experienced a pocket of space to exist without observation for the first time in our lives, and it’s changed us—it’s given us the chance to experiment with gender expression, to relax into our own bodies, to practice a different relationship with work. How do we protect those newly discovered parts of ourselves as we return to some kind of normal? It feels like an unprecedented problem, but in some ways, these are the same questions we’ve been asking since the start of this pandemic. How do we keep ourselves safe and also stay connected? The threat might have a different shape, but the tension between the desire and the dilemma feels familiar.

A few months into the pandemic, my mom initiated a weekly family Zoom. Every Tuesday afternoon, she and my sisters and I synched up on one screen for two hours. There was no agenda or obligation. Sometimes we were late or in the car or at the park. Sometimes we had to stay on mute the entire time because a baby was crying in the background (oh hello, Otto!), but we continued to show up, week after week. We vented and soothed, lamented and advised, grieved and rallied.

How do I teach him to be brave? To hold on to himself when the opinions of others are loud and everywhere?

One Tuesday afternoon, as I geared up for another of Otto’s doctor’s appointments, I released the valve holding back my anxiety about the valet’s persistent scrutiny. The enormous dread I felt in anticipation of these short walks from the garage to the hospital was getting worse. I would lie awake the nights leading up to the appointment, replaying the memory of being watched, trying to imagine the thoughts running through her head as she glared at us, worrying that this next time would be the time Otto would cry. And then what would she do?

I shared this with my family across the screen, throat tight, tears brimming. As soon as I said it out loud, I couldn’t believe I hadn’t brought it to them earlier. Just the relief of hearing them hear it made the experience feel smaller. They affirmed my abilities, validated the stress and felt it all with me. The next morning, as I pulled into the familiar parking garage, my phone buzzed with texts. “We’re with you!” they said. Their solidarity created a buffer around me as I pulled Otto from his car seat, strapped him to my chest and pushed us toward the hospital. That shield is what I remember most about that morning.

As Otto and I take our first cautious steps into the world together, I wish I could keep our bubble wrapped around us, grow calluses and not care when people stare, become impenetrable. But I don’t think this is a problem I can solve entirely on my own. As the pandemic crystallized for us, we are inextricably linked. We can only do so much to protect ourselves on our own; we’re much safer when we prioritize the health of the whole community. I think of all we did to protect each other this past year—staying home when we could, wearing masks, maintaining distance to keep all of us safe. Not everyone, of course. I don’t live in the land of unicorns and sparkle dust. But many of us learned to forge pockets of refuge for one another in the midst of the threat.

Watching this collaborative rallying makes me wonder what else we can build with these new skills we learned out in the wild. Can we re-create that same practice of care for our emotional well-beings? What would it look like to make space for each other to have changed? To reunite without expectation that anything has to look or sound or move or be the way it was before? To go into a day remembering—in our ­bodies—just how much risk it takes to show up at all, let alone to go against the grain?

Micah, Otto and I have started a tradition before we leave the house each day. We pause by the door, gather in a little triangle huddle and give each other a torrent of kisses. Almost like an incantation of protection, a practice of softness. I hope we are teaching Otto to be brave and also kind; to hold on to himself in all of the noise and to hold space for other people; to take the good risks and offer others a soft place to land; to create boundaries and respect others’ limits.

We aren’t starting from scratch. We know how to do this.

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